Join BetterLife FSHD Today!
Every breakthrough in FSHD has been made because patients and their family members got involved. We believe a treatment is within sight; your participation will move us closer, faster.
FSH Muscular Dystrophy is different for everyone. Each person has their own unique journey with FSHD. The FSHD Society is here to educate and empower individuals to live their best lives until a cure is found.
There is great power in coming together. Around the globe, individuals with FSHD prove this every day. It is each person's unique strengths, skills, and interests that makes our community strong.
The FSHD Society is the world’s largest research-focused patient support organization. We work with people and organizations to identify the barriers slowing down the discovery of treatments and cure, then work together on solutions.
Following the highest standards financial accountability, the FSHD Society has transformed the landscape for FSHD research, and is committed to making sure that no one faces this disease alone.
Education: A Patient's Best Weapon for Change
FSHD University is your center for learning about the art and science of living with FSH muscular dystrophy. Our webinars and other resources are designed to empower individuals with FSHD to live their best lives, physically and mentally. Our departments of Physical Health, Wellness, and Research provide videos, articles, and other resources, by the world's top experts, including many people living with FSHD.
FSHD University is a place for you to gain knowledge, get connected, and find hope.
Latest Blog Posts
Avidity Biosciences Completes Enrollment in Biomarker Cohort in Phase 1/2 FORTITUDE™ Trial
Letter from Avidity Biosciences to the FSHD community: March 31st, 2025 Dear FSHD Community, Today, we are very pleased to share with you that we have completed enrollment in the biomarker cohort in the Phase 1/2 FORTITUDE clinical trial of delpacibart braxlosiran (del-brax/) in people living with facioscapulohumeral muscular dystrophy (FSHD). You can view our…
Epicrispr Biotechnologies achieves milestones in developing groundbreaking therapy for FSHD
Epicrispr Biotechnologies, a South San Francisco-based biotech company, has announced two major advancements in its mission to develop transformative therapies for genetic diseases. The company secured $68 million in Series B financing and received FDA clearance for its Investigational New…
Upcoming Events
Featured
Wellness Hour – Therapy for hands
Zoom Virtual Meeting , United States5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month's guest will focus on hands: tips on how to strengthen and the role of occupational therapy. Our guest is Debbie Olerud-Curley COTA/L, a licensed occupational therapy assistant. Debbie graduated from North Dakota State School of Science in 1988....
Everything Early Onset – Postponed
NEW SCHEDULE: Second Monday of every other month. Next meeting is in May 7:00 p.m. ET | 6:00 p.m. CT | 5:00 p.m. MT | 4:00 p.m. PT The Everything Early Onset group hopes to engage adults of all ages living with early-onset FSHD and build a community where we can share our experiences and...
Parents’ Roundtable – Dr. Brianna Brun
Zoom Virtual Meeting , United StatesParents' Roundtable 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Brun~Brianna Brianna Brun, MD, is a neuromuscular specialist at the University of Rochester. She is stepping into the legendary Rabi Tawil's role. She'll be talking about the MOVE Pediatric study, the importance of routine clinical appointments for children,...
We bring people together to find solutions; researchers, doctors, the drug development industry, patients and families. Your participation is the key. There are many ways you can get involved.